How Lupus Affects Memory and Tips for Reminders
If it were not for post-it notes, I think I would be completely lost. Lupus seems to have tapped into my memory banks for a sizeable withdrawal of daily information.
My life is filled with deadlines for work, parental commitments and doctor’s appointments, but no matter how much I try and commit them to memory they become muddled or totally forgotten.
The fact is, lupus brain fog can make an important event on my calendar completely vanish from my memory. I don’t mean believing it is scheduled in the future rather than today, but vanished like it never existed.
Much to my embarrassment, I have forgotten birthdays, doctor’s appointments and even a family member’s funeral. I have been asked, “How could you forget this!?” and I don’t have a great answer.
Lupus robs you of dignity as well as the person you once were. I find myself trying to explain lupus when even I don’t fully understand its effect on me.
Fighting Through the Lupus Fog
I’ve found myself in a moment of uncertainty about how a seat belt unlatches or how to turn on my car’s windshield wipers, and it’s more than a bit frightening. I know I am not alone in these panicked moments when it seems like I have suffered some major memory loss.
I knew I had to do something when one day I forgot exactly what time I was supposed to pick up my children from school, something I had done five days a week for several months. I got the exact time confused with when I normally arrived back home with them and therefore left 15 minutes late.
So there I was, walking in as the last parent for pick up, something I never would normally do to them, something that is completely not me.
Doctors do not seem overly concerned with the memory issues lupus can cause. This leaves us fending for ourselves as we try and navigate our life and responsibilities as parents, employees and as a partner with lupus. Having a system to help you is imperative to keeping your life on track.
I have learned through others with lupus, as well as my doctor, that the wolf can create memory issues and brain fog which at times makes us lupies so forgetful that we can feel uncertain of how to do routine tasks.
It is debilitating and jarring to realize you forget more than just doctor’s appointments and family birthdays, but also how to do mundane things you have done a million times. The other day, I could not figure out which knob turned on the front burner of my stove. I am an avid cook. It was unthinkable to me that I could forget this.
I have also had moments where I couldn’t remember the road I was driving on. I feel suddenly lost and confused as to where I am, and wonder if I have perhaps missed a turn because I did not recognize it.
The good news is, it is not all the time and sometimes the moment of confusion passes and my memory comes flooding in like a warm breeze. But when memory escapes me, I am scared even though I know lupus is the cause.